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The 2 step approach is generally indicated over the 3 except In patients that are acutely ill (anemia, weight loss), have a high body mass index (BMI), are on high doses of steroids (Prednisone), taking immuno-modulators (Imuran, 6MP) and/or biologic agents (Remicade, Humira, Cimzia, Sumponi), or who require surgery to be performed emergently. In such cases it may be safer to treat the colorectal disease in three stages. The reason should be obvious, it's always ideal to have 2 surgeries instead of 3 because things can go wrong whenever surgery happens.

I was considered a borderline decision as between 2 and 3 steps due to being on a high dosage of prednisone and having a very advanced disease. However my weight was good, so I decided on 2 step based on the latter theory. When my colon was removed, my surgeon reported it dissolved in his hands due to the advancement of the disease. However the ileum, at that time, had no disease and there was no problems creating the J pouch and I had takedown 3 months later as is normal. The situation in the ileum has since changed, but is now controlled with Remicade.

Last edited by CTBarrister
@Winterberry posted:

Two step for me. Takedown was 12 weeks later due to my stoma retracting under the skin line, causing excoriated skin. Tests showed pouch was healthy and ready, so surgeon said the only thing to relieve your stoma skin is takedown, so let's go.

Oh my goodness! I never heard of that! I am super glad you are okay! I see I am not the only one that had problems with a bag

@CTBarrister posted:

The 2 step approach is generally indicated over the 3 except In patients that are acutely ill (anemia, weight loss), have a high body mass index (BMI), are on high doses of steroids (Prednisone), taking immuno-modulators (Imuran, 6MP) and/or biologic agents (Remicade, Humira, Cimzia, Sumponi), or who require surgery to be performed emergently. In such cases it may be safer to treat the colorectal disease in three stages. The reason should be obvious, it's always ideal to have 2 surgeries instead of 3 because things can go wrong whenever surgery happens.

I was considered a borderline decision as between 2 and 3 steps due to being on a high dosage of prednisone and having a very advanced disease. However my weight was good, so I decided on 2 step based on the latter theory. When my colon was removed, my surgeon reported it dissolved in his hands due to the advancement of the disease. However the ileum, at that time, had no disease and there was no problems creating the J pouch and I had takedown 3 months later as is normal. The situation in the ileum has since changed, but is now controlled with Remicade.

Are you on Remicade now because of Crohns disease?

Are you on Remicade now because of Crohns disease?

Yes, although the actual diagnosis is irrelevant- it was inflammation in both my J Pouch  and the ileum above the J pouch which developed 15 years after takedown.  It's well controlled with Remicade, although slightly less well controlled in the neoterminal ileum than in the J Pouch.

Last edited by CTBarrister

Sounds like Crohns. I am sorry that happened but I am glad you are doing well

What it sounds like and what label you choose to describe it is completely irrelevant in my opinion - my diagnosis has wavered between "pouchitis", "Crohn's" and "indeterminate." Prometheus and MRI/CT Enterography diagnostic tests were inconclusive on diagnosis and as far as I am aware medical science has ceased worrying about diagnostic labels once you have a J Pouch and inflammation arises.  It is inflammation and you can label it whatever you want.  You have to treat it, the treatments are all the same and either it responds to treatment or not.  Mine does.  So what you call it really, really does not matter.  What does matter, if inflammation arises in the J Pouch, is how to treat it effectively so that you have a good quality of life.  I have done it for over 25 years.

Last edited by CTBarrister
@Scott F posted:

I did have a post-op ileus for about 10 days, and that was pretty unpleasant.

I did as well, mine lasted 5 days, ended with the dreaded NG tube.  I had it in for 24 hours and once the ileus resolved (which I knew from my bag filling up) I pulled out the NG Tube on my own.  The nurses were not pleased with me but the horse had left the barn, and when the horse has left the barn, there is not much you can do except yell and swear.

Last edited by CTBarrister
@CTBarrister posted:

I did as well, mine lasted 5 days, ended with the dreaded NG tube.  I had it in for 24 hours and once the ileus resolved (which I knew from my bag filling up) I pulled out the NG Tube on my own.  The nurses were not pleased with me but the horse had left the barn, and when the horse has left the barn, there is not much you can do except yell and swear.

Lol. I love your sense of humor. I had a NG Tube too because of the multiple blockages with my baggy

@CTBarrister posted:

What it sounds like and what label you choose to describe it is completely irrelevant in my opinion - my diagnosis has wavered between "pouchitis", "Crohn's" and "indeterminate." Prometheus and MRI/CT Enterography diagnostic tests were inconclusive on diagnosis and as far as I am aware medical science has ceased worrying about diagnostic labels once you have a J Pouch and inflammation arises.  It is inflammation and you can label it whatever you want.  You have to treat it, the treatments are all the same and either it responds to treatment or not.  Mine does.  So what you call it really, really does not matter.  What does matter, if inflammation arises in the J Pouch, is how to treat it effectively so that you have a good quality of life.  I have done it for over 25 years.

Overall, I am just happy you are okay I know Remicade takes 4 hours at the hospital about every 4-8 weeks for some patients, but hey it works I see

My planned two step (the 1st step a colectomy and end ostomy, the 2nd step build and connect jpouch) turned into 4 surgeries.  After the 2nd step I got peritonitis before I left the hospital and had to have emergency 3rd surgery to disconnect the jpouch and give me a loop ostomy.  Then finally a 4th surgery to take down the ostomy and reconnect the jpouch.  The peritonitis was incredibly painful, far worse than any of my surgeries.  Worse than when I donated a kidney.  I also had an awful time with the loop ostomy and even with daily bag changes ended up with painful skin erosion.  I went to work after the first surgery, but had to work from home after the 2nd/3rd due to my struggles with the ostomy.  What a relief to get the 4th surgery!  

I know Remicade takes 4 hours at the hospital about every 4-8 weeks for some patients, but hey it works I see

I get Remicade at an infusion center every 6 weeks and it's close to 2 hours for the actual infusion time.  You have to keep your arm straight as the medication is infused or the IV drip takes longer, which I have learned the hard way when I bring work or start texting on my phone, activities that invariably disrupt your arm being in a straight, relaxed position.

@CTBarrister posted:

I get Remicade at an infusion center every 6 weeks and it's close to 2 hours for the actual infusion time.  You have to keep your arm straight as the medication is infused or the IV drip takes longer, which I have learned the hard way when I bring work or start texting on my phone, activities that invariably disrupt your arm being in a straight, relaxed position.

Oh good, I am glad it is two hours for you and not every 4 weeks. I hear all kinds of things about it. And yeah I bet, some people said they sleep through the whole thing. I would probably bring books with me to read and get caught up on reading time  lol. The whole keeping the arm straight thing might be hard to try to read books though. 

My brother only had one surgery (in approx 1967).  He was 9 years old at the time.  Never had a problem.  I had two surgeries, like most, in 1995 which were about 4-5 months apart.  I had a horrific post op infection after the first one that added a few weeks of hospitalization, which is why the 2nd surgery was delayed.  The ostomy felt like a gift from god, compared to active u/c.  Of course, I was thrilled to have the 2nd surgery.  

@Mary O posted:

My brother only had one surgery (in approx 1967).  He was 9 years old at the time.  Never had a problem.  I had two surgeries, like most, in 1995 which were about 4-5 months apart.  I had a horrific post op infection after the first one that added a few weeks of hospitalization, which is why the 2nd surgery was delayed.  The ostomy felt like a gift from god, compared to active u/c.  Of course, I was thrilled to have the 2nd surgery.  

WOw you both have J-pouches? That is soo cool!

I had colon removed in December 2017 (cancer fear, plus I have PSC), jpouch built in June of 2018, and takedown in December of 2018.  So I had a year of the bag, with a change in stomas halfway through.  Not a fun year, as after the first two surgeries I had major blockages and had to go back to the hospital for NG tube joy (4 days, then 2 days).  About 5 weeks in hospital in total.  Then in November of 2019 I had hernia surgery too.  Ugh.  Ok now, but still lots of tough days. 

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